Today I leave for New York. I cannot think of any time in my life that I have been more uneasy. Tomorrow I check in to the hospital for a seven hour operation. After that I will be sedated for another day or two in the Intensive Care Unit. Once I am stable I will be moved to a semi-private room for a few more days. After that I will be in a 'hotel' run by the American Cancer Society for about 10 days. That confirmation came Friday at 5 PM. So all the details are worked out now.
What is not worked out is the uneasy feeling I have about all this. On the one hand, the cancer is terminal. On the other hand the operation or follow on complications can kill me too. The advantage I have is that this surgical team is very familiar with the procedures because they do it often. Then there is the truth I learned when I studied all my risks with pancreatic cancer - statistics don't mean anything until you are one. So, even with a low statistical percentage of patient mortality, there still is one. So I look at this as very much unexplored territory, it is my trip through the risks of a lengthy surgery and recovery. I wonder if I will ever be 'the same'. Certainly I am already changed forever by the cancer, just how this surgery will change that situation I am not sure.
I will be gone for three weeks starting today. I have left instructions for my wife to post here if she can to keep everyone informed. I will not be able to post until I return. My access to this account and most of my other means of communications will cease today as I am not allowed a computer in the hospital and I am not sure about the Cancer Society lodge whether it even has internet access. I will probably have to rely on word of mouth via telephone contacts to get the word on my condition out.
So, there it is. I am absolutely up against a wall, the next few weeks will have a major impact on my life. I have to turn off as much emotion as I can and just weather this episode. Good luck to all of you. See you in three weeks.
Monday, February 22, 2010
Friday, February 12, 2010
Administrivia, what needs to be done needs to be done again
The final detail I thought had been nailed down proved to be not so quite nailed down. It goes like that. The lodging at Hope Lodge was actually not complete. It is purportedly done now. More hell raising on the part of Nutri-Nazi. At some point here I am going to just get tired of it all and then all hell is going to break loose. But for now, I am going to hold back my tendency to go for results the hard way. You'd think after this last year I would mellow out. Nope, there are only so many miracles in any crisis.
Tonight is Steely Dan and my time in my cave. Famous Grouse scotch in small doses. The snow outside is beautiful. It was Siberia this morning. We have the most polite snow here. It shows up for long enough to be beautiful and entertaining and before it wears old it is gone. Perfect weekend guest.
Maybe in a while I'll go light a fire and entertain my long suffering wife. Or entertain the fire and .....
Tonight is Steely Dan and my time in my cave. Famous Grouse scotch in small doses. The snow outside is beautiful. It was Siberia this morning. We have the most polite snow here. It shows up for long enough to be beautiful and entertaining and before it wears old it is gone. Perfect weekend guest.
Maybe in a while I'll go light a fire and entertain my long suffering wife. Or entertain the fire and .....
Wednesday, February 10, 2010
More logistics minutae arranged
I finally heard from the social worker today that can get me into the cancer convalescence residence. It is called Hope's Door, in New York City. It is run by the American Cancer Society. It will be my home for about 8 to 10 days while they monitor me in case I spring a leak or in case any other unexpected things happen. That is a great relief.
I have promised myself that I will procure for them some items for their patients. They have a wish list of things and ten irons is on there. I will now spend some of my ample free time trying to find quality stuff at low prices and get it all shipped to them. Shouldn't be too tough, I have already set it pretty much in place.
Our airfares to New York are a horrible mess but I finally just got actual tickets to fly out on February 21. That leaves some money tied up in standby tickets but we can deal with that. Janice is also working another angle but the snowstorms across the country have made getting people on the phone kind of iffy.
Having actual tickets and reservations also makes it possible for me to attend the annual camp out in the rain, the mud and the beer that is celebrating approximately its twentieth anniversary this year. No one really knows when it started because these guys are all fifty years plus and they have a poor memory, blotted to some extent by beer, time and other major events in their lives. So we will call this 20 and celebrate in the familiar fashion. We expect it will be raining, we expect it will be cold and muddy, and we expect they will all drink more beer or alcohol than is humanly possible. I will remain sober as the surgery will be four days later and I can't afford any detriment to my health. The highlight of the camp out is the Saturday night fire that consumes an impressive amount of wood and produces some wonder among the uninitiated and even among some veterans. The fire ring is expected to once again glow cherry read for most of the night, and we will be melting beer bottles in the fire. Inside every man is a young boy struggling through life. This camp out lets that little boy in all of us run rampant for a day or two. Sunday morning we will all return to society relaxed and recharged, our inner little boy securely tucked away for another year.
I have promised myself that I will procure for them some items for their patients. They have a wish list of things and ten irons is on there. I will now spend some of my ample free time trying to find quality stuff at low prices and get it all shipped to them. Shouldn't be too tough, I have already set it pretty much in place.
Our airfares to New York are a horrible mess but I finally just got actual tickets to fly out on February 21. That leaves some money tied up in standby tickets but we can deal with that. Janice is also working another angle but the snowstorms across the country have made getting people on the phone kind of iffy.
Having actual tickets and reservations also makes it possible for me to attend the annual camp out in the rain, the mud and the beer that is celebrating approximately its twentieth anniversary this year. No one really knows when it started because these guys are all fifty years plus and they have a poor memory, blotted to some extent by beer, time and other major events in their lives. So we will call this 20 and celebrate in the familiar fashion. We expect it will be raining, we expect it will be cold and muddy, and we expect they will all drink more beer or alcohol than is humanly possible. I will remain sober as the surgery will be four days later and I can't afford any detriment to my health. The highlight of the camp out is the Saturday night fire that consumes an impressive amount of wood and produces some wonder among the uninitiated and even among some veterans. The fire ring is expected to once again glow cherry read for most of the night, and we will be melting beer bottles in the fire. Inside every man is a young boy struggling through life. This camp out lets that little boy in all of us run rampant for a day or two. Sunday morning we will all return to society relaxed and recharged, our inner little boy securely tucked away for another year.
Monday, February 8, 2010
After the first rush of the good news
It has been several days since I got home. Every night I have been out with friends. I am amazed how many people have rallied to my corner. It is something that amazes me on a level I never imagined. I see plainly that my life up to now has been spent not counting on people and maybe that is where I missed so much of life. I can't really describe where it was that I withdrew from the world, at what point it was that I turned off the contact. But in the last few days I have seen something that makes me really want to live. I have friends who really care and I need to honor that. It will be the first step in earning my new life.
To that end, I met a friend of a friend who has a motorcycle but he has never really taken it on the road. Today I proposed a couple of trips that will be longer than anything he has done before. Maybe I can help him get some miles on his bike and really enjoy the road. And the places I picked are places that I would like to go to anyway. I also talked with another friend about this camping trip coming up. Just before my surgery is the annual camping trip (been going on for 20 years, I have been with it for five) and I need to arrange so I can go. A friend suggested we go early and do some shooting on the property of one of the other guys then head to the camping spot. Doing that gives me time at the camp out and some time for talking and just being outdoors. If you like being in a near constant drizzle and cold while drinking beer. I still have to negotiate with Nutri-Nazi as she wants to fly out that Sunday. She has no real feelings for the camp out and would sacrifice the weekend easily to be in New York early. This is going to be some real negotiations.
Nutri-Nazi, ever the poser of popular philosophical dilemmas has asked me what I am going to do to make this new found life worthy of living. I find the question somewhat passe as I have already determined that I have several things to do that will very much justify my new lease on life. I kind of resent having to 'justify' my new life. All I want to do is explore life with a little more enthusiasm and avoid the unhappiness that brought the cancer and the last year of drama. I will start with recognizing and encouraging more sincere contact with my friends. From there I am sure other things will present themselves without my having to put together a schedule and process plan.
It has been only a few days since the operation has been scheduled. I feel like a ten year old. A massive and threatening weight has been lifted from my shoulders and the promises are still taking shape. They will slowly coalesce as the days go on. I have ordered some books to pursue a few hobby interests. I have finally been able to focus enough to actually make progress on resuming a programming career. Amazing the clarity you have when you the 80% of your mental faculties back that used to be completely involved in cancer related stress. So many changes coming now, it will take days and weeks to develop them.
Seems strange to sit here in silence and not have my heart pounding so hard and my ears ringing from high blood pressure induced tinnitus. I hear silence for the first time in a year. Its the little things that you notice sometimes.
I say to any one who reads this. Put your coat on, go outside and look around and imagine that this is the first time you ever opened your eyes and really looked. It might just be a little change in your life. Because out here in Texas, that is where I am headed and I expect to see a world full of promise, just like a ten year old would. I am reminded of something I said many years ago. Age is relative to how old you feel, and I am feeling very young today.
To that end, I met a friend of a friend who has a motorcycle but he has never really taken it on the road. Today I proposed a couple of trips that will be longer than anything he has done before. Maybe I can help him get some miles on his bike and really enjoy the road. And the places I picked are places that I would like to go to anyway. I also talked with another friend about this camping trip coming up. Just before my surgery is the annual camping trip (been going on for 20 years, I have been with it for five) and I need to arrange so I can go. A friend suggested we go early and do some shooting on the property of one of the other guys then head to the camping spot. Doing that gives me time at the camp out and some time for talking and just being outdoors. If you like being in a near constant drizzle and cold while drinking beer. I still have to negotiate with Nutri-Nazi as she wants to fly out that Sunday. She has no real feelings for the camp out and would sacrifice the weekend easily to be in New York early. This is going to be some real negotiations.
Nutri-Nazi, ever the poser of popular philosophical dilemmas has asked me what I am going to do to make this new found life worthy of living. I find the question somewhat passe as I have already determined that I have several things to do that will very much justify my new lease on life. I kind of resent having to 'justify' my new life. All I want to do is explore life with a little more enthusiasm and avoid the unhappiness that brought the cancer and the last year of drama. I will start with recognizing and encouraging more sincere contact with my friends. From there I am sure other things will present themselves without my having to put together a schedule and process plan.
It has been only a few days since the operation has been scheduled. I feel like a ten year old. A massive and threatening weight has been lifted from my shoulders and the promises are still taking shape. They will slowly coalesce as the days go on. I have ordered some books to pursue a few hobby interests. I have finally been able to focus enough to actually make progress on resuming a programming career. Amazing the clarity you have when you the 80% of your mental faculties back that used to be completely involved in cancer related stress. So many changes coming now, it will take days and weeks to develop them.
Seems strange to sit here in silence and not have my heart pounding so hard and my ears ringing from high blood pressure induced tinnitus. I hear silence for the first time in a year. Its the little things that you notice sometimes.
I say to any one who reads this. Put your coat on, go outside and look around and imagine that this is the first time you ever opened your eyes and really looked. It might just be a little change in your life. Because out here in Texas, that is where I am headed and I expect to see a world full of promise, just like a ten year old would. I am reminded of something I said many years ago. Age is relative to how old you feel, and I am feeling very young today.
Thursday, February 4, 2010
Back to Texas
My consult in New York went well. I met with the head of the surgical team and several members of the staff. We discussed just about all the angles and they determined that given all the conditions and complications that they can do the surgery.
The complications are that the cancer has invaded the superior mesenteric vein. This vein takes blood from my intestines back to the heart. My body has utilized other paths around the blockage but to complete the surgery they will have to enhance the blood flow in that area by reconstructing the vein. They cannot properly analyze that situation until they go in. The best pictures they have are CT scans and MRIs and they are only so good. They will remove the head of the pancreas and my gall bladder as well as the bile duct stent that was placed last March. I won't miss the stent, the gall bladder I would rather keep, but if it has to go, so be it.
I will be hospitalized for ten days or so, or until they get tired of me, whichever comes first. Then there will be ten days or so of convalescence somewhere in New York City before I am released. Such a pity, all those great restaurants and I'll be on a restricted diet. I am still trying to arrange where the convalescence will be so there are still some logistics to settle.
Also, since the time is extended, Nutri-Nazi and I have to wrangle out the time(s) she will be with me. She will likely come up for the surgery, return and then come up again when I transition from hospital to convalescence. The coordinator and the surgical team both went over the menu for when I am out of surgery. I had to tell them that Nutri-Nazi, true to form, already has it posted on the refrigerator. She is already scheming to control my diet. The woman is absolutely ruthless on diets and controlling food consumption. Hence the name Nutri-Nazi.
All in all, this is the first day in nearly a year I have not felt death standing right here, looking at his watch and tapping his foot impatiently. Kinda miss him. He was fun to play poker with (great poker face), lousy at small talk, but he did have some funny stories. You have to appreciate dark humor though.
The complications are that the cancer has invaded the superior mesenteric vein. This vein takes blood from my intestines back to the heart. My body has utilized other paths around the blockage but to complete the surgery they will have to enhance the blood flow in that area by reconstructing the vein. They cannot properly analyze that situation until they go in. The best pictures they have are CT scans and MRIs and they are only so good. They will remove the head of the pancreas and my gall bladder as well as the bile duct stent that was placed last March. I won't miss the stent, the gall bladder I would rather keep, but if it has to go, so be it.
I will be hospitalized for ten days or so, or until they get tired of me, whichever comes first. Then there will be ten days or so of convalescence somewhere in New York City before I am released. Such a pity, all those great restaurants and I'll be on a restricted diet. I am still trying to arrange where the convalescence will be so there are still some logistics to settle.
Also, since the time is extended, Nutri-Nazi and I have to wrangle out the time(s) she will be with me. She will likely come up for the surgery, return and then come up again when I transition from hospital to convalescence. The coordinator and the surgical team both went over the menu for when I am out of surgery. I had to tell them that Nutri-Nazi, true to form, already has it posted on the refrigerator. She is already scheming to control my diet. The woman is absolutely ruthless on diets and controlling food consumption. Hence the name Nutri-Nazi.
All in all, this is the first day in nearly a year I have not felt death standing right here, looking at his watch and tapping his foot impatiently. Kinda miss him. He was fun to play poker with (great poker face), lousy at small talk, but he did have some funny stories. You have to appreciate dark humor though.
Monday, February 1, 2010
Tomorrow is another day...
Tomorrow I embark on my journey to New York to discuss my ultimate fate with a man I have never met. I know only his name but he holds my life in his opinion. I have sent him all the tests and reports that are pertinent to my condition. Wednesday he will likely render an opinion, the outcome of which will be life changing to me.
I can only think of one other time when such a trip was so momentous, the day I left for Vietnam. The feelings are much the same for much the same reasons. Life and death hangs in the balance. The difference being that when I left for Vietnam I hadn't faced death or battle yet. I have now been in trench warfare with rounds going over my head for nearly eleven months, I just can't shoot back. Even though I faced death every day of all those eleven months. When this first started I woke from every sleep with one thought, always the same thought, "I am going to die". Now that is all in the past, I just wake up and try to make every day normal. Not so easy when you feel like crap from chemo or whatever medicine you just started or finished. Some days are better than others.
I sent the disk from the last CT and the radiologist's report to New York so it wouldn't get lost or misplaced, or worse yet forgotten in the rush to get out the door. I have the deepest fear of traveling I have ever experienced. I feel vulnerable like I have never before experienced. This is a very difficult time for me. I just need to treat this like any ordinary business trip. If only I could.
In a few days, in a few days I will know more. I will post when I can. The rest of this week and next are all up in the air. Surgery is scheduled for next week, if I am considered fit and otherwise qualified. But it is all subject to change.
I can only think of one other time when such a trip was so momentous, the day I left for Vietnam. The feelings are much the same for much the same reasons. Life and death hangs in the balance. The difference being that when I left for Vietnam I hadn't faced death or battle yet. I have now been in trench warfare with rounds going over my head for nearly eleven months, I just can't shoot back. Even though I faced death every day of all those eleven months. When this first started I woke from every sleep with one thought, always the same thought, "I am going to die". Now that is all in the past, I just wake up and try to make every day normal. Not so easy when you feel like crap from chemo or whatever medicine you just started or finished. Some days are better than others.
I sent the disk from the last CT and the radiologist's report to New York so it wouldn't get lost or misplaced, or worse yet forgotten in the rush to get out the door. I have the deepest fear of traveling I have ever experienced. I feel vulnerable like I have never before experienced. This is a very difficult time for me. I just need to treat this like any ordinary business trip. If only I could.
In a few days, in a few days I will know more. I will post when I can. The rest of this week and next are all up in the air. Surgery is scheduled for next week, if I am considered fit and otherwise qualified. But it is all subject to change.
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